Monday, 20 June 2016

THE CIRCULAR REASONING OF LYME DISEASE

On and on and on the arguments continue. Once again a paper about testing for Lyme Disease

Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States.



But most importantly read the comment 

Circular Reasoning in CDC Lyme Disease Test Review

Raphael B. Stricker, MD; Lorraine Johnson, JD, MBA

Previous studies have shown that commercial two-tier serological testing has a sensitivity of about 46% in later-stage Lyme disease in the USA [1]. Commercial two-tier Lyme testing in Europe demonstrates the same poor test sensitivity [2].

The Table in the latest Centers for Disease Control and Prevention (CDC) review by Moore et al. cites three studies allegedly showing that two-tier Lyme testing in later-stage (“non-cutaneous”) Lyme disease has a sensitivity of 87-96% [3]. These numbers will undoubtedly be used to support two-tier testing as a valid diagnostic tool for Lyme disease. Therefore it is important to understand the circular reasoning that produced these inflated and misleading numbers.

Analysis of the three studies cited in the CDC review reveals the following: patients with later-stage Lyme disease had to have positive serology in order to be included in the study, and then they had positive serology. Circular reasoning

Go to the above link to read the comment in it's entirety.

Currently Dept of Health have promised to conduct three reviews on Lyme Disease some details of this are discussed here https://caudwell-lyme.net/2016/06/03/the-uk-governments-independent-lyme-disease-reviews-a-discussion-with-prof-chris-whitty/

Many of us have concerns as to how these reviews will be conducted and how the evidence will be looked at.
The above is a good example of the circular reasoning that has dogged Lyme disease science.

There appears to be no opportunities for patients and their doctors to contribute to the review process and highlight such circular reasoning. 

Saturday, 4 June 2016

TICK EXPLOSION IN UK! WHERE IS THE LYME DISEASE WARNING?





In excess of 100 ticks found on one dog after a walk on Ainsdale beach. Southport, Mersyside UK.

These ticks appear to be a mixture of Nymphal and adult ticks in various stages of having fed so possibly acquired on more than one walk.
However this is an exceptionally high number for one animal to collect, it is not as if it rolled in a nest of larva ticks these ticks are in the case of Nymphs have already had one feed from a mammal - ie bird, mouse, rat, human and in the case of adults have already had two feeds from mammals, so have moved widely carried on whatever mammal they fed on.
Another scary point is that one normally doesn't associate ticks with arid landscapes such as beaches but generally with woodland and country areas. So it highlights just how robust the ticks are at surviving even arid conditions.
It is interesting to note the 1000+ shares on the post many of whom I suspect will be from patients already struggling with Lyme Disease and other tick borne diseases.
It is sad however to read many of the 140+ comments especially ones which illustrate a lack of awareness and knowledge about tick borne diseases or the risk dogs and dog owners are to such illnesses.


In the same week there was a report (in the LDUK Discussion group on Facebook) of a family in The Salford area visiting Lyme Park and having to go to A & E to have ticks removed. It took 2 1/2 hours and over 100 ticks were removed from one child - the hospital were reported to say they had had a number of cases from that area.

Since 2015 there has been much awareness of ticks from the Big Tick Project
 http://www.mypetonline.co.uk/big-tick-project

Prof Richard Wall has been interviewed a number of times in which he sates that Ticks are found throughout the UK there are NO hot spot areas, and that Lyme is evenly spread.

There has also been awareness raising from Lyme patients with successive media stories and protests for a number of years. May is Lyme Disease awareness month and details of activities are posted here- 
http://lymediseaseuk.com/2016/05/26/uk-lyme-disease-protest-2016-2/

Meanwhile our Government will take another year or two to respond to these risks with a NICE guideline process and three reviews on testing/diagnosis, treatment and transmission.
https://caudwell-lyme.net/2016/06/03/the-uk-governments-independent-lyme-disease-reviews-a-discussion-with-prof-chris-whitty/

Much more could be done now by Government, NHS, Media to highlight the risks so people can protect themselves, their children and their pets. The costs of not treating an early case of infection can be years of debilitating health problems, with NHS doctors clueless as to how to help us. 

Thursday, 19 May 2016

DR NEIL SPECTOR - Survivor of Heart disease caused by Lyme Disease TEDx talk




Published on May 18, 2016
Imagine that Personalized Medicine is anything but personal, where healthcare is delivered according to apps and algorithms, relegating the Art of Medicine obsolete. Dr. Spector remains a strong proponent of Personalized Medicine but not at the expense of losing the valued practice of medicine as an art rather than an exact science.

Dr. Neil Spector is the author of “Gone in a Heartbeat: A Physician’s Search for True Healing.” Neil Spector, MD, is also the Sandra Coates Associate Professor of Medicine, and Associate Professor of Pharmacology and Cancer Biology at Duke University School of Medicine. He is also the Director of the Developmental Therapeutics at the Duke Cancer Institute. In addition, Dr. Spector is on the Advisory Boards for the Bay Area Lyme Foundation, Global Lyme Alliance and the Dean Center for Lyme Disease Rehab at the Spaulding Rehab Hospital, Harvard Medical School. After attending medical school and fulfilling his internal medicine residency a the University of Texas-Southwestern Medical Center, Dr. Spector completed his hematology medical oncology training at Massachusetts General Hospital and Dana-Farber Cancer Institute, Harvard Medical School.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx 

Earlier post on Dr Spector talking about his experience with Lyme Disease which resulted in him having a heart transplant -

Tuesday, 17 May 2016

BORRELIA LYME DISEASE AND CHRONIC DISEASES - LIFTING THE VEIL III -

Lifting the Veil III conference http://www.aonm.org/ 

A few notes from the conference, a video will be available from the AONM website in a couple of weeks.

Dr. Judy Mikovits Keynote Speech: The Terrain IS Everything! Lessons Learned from Four Decades of Immune Therapy.

Taking Mystic and misconceptions away from chronic diseases.
Many patterns of receptors on cells which bacteria can affect.
Plasticity in Immune response not one thing and one end result, it is a gradient and a tipping point.
How Borrelia affects immune system.
We are not thinking of vaccines as immune modulators, we are just thinking of them as disease control.
Advances in technologies reveal unintended consequences of current vaccine strategy.
Infants  can't develop immune responses but may develop an immune deficiency until 3 years old.
Recommended reading http://www.amazon.com/Immune-System-Developing-Brain-Colloquium/dp/1615043519
Disease engines - sub clinical, microbial infection, oxidative stress, inflammation.
Conclusion
Chronic neuro diseases emerging in the last 4 decades as Acquired Immune Deficiencies.
Utilizing advances in technology to drive paradigm shifts in understanding of basic biology affords incredible opportunity to end suffering and restore quality of lives to millions worldwide.

Dr. Armin Schwarzbach Chronic Infections ­ Transmission within Families and the Consequences 
Dr Mikovits introduced Dr Schwarzbach saying he had diagnosed over 20,000 Lyme Disease cases.
Transmission
Pathogen - infection- disease
2015 study - Germany Borrelia found in mosquitoes, also larva affected showing transmission.
Earlier studies found Borrelia in Horse flies.
1992 Deer Fly infected with Borrelia.
2015 Borrelia Miyamotoi could be transmitted by blood transfusion.
2014 Stricker study re sexual transmission may suggest yes but need more studies to be accepted.
2001 Dr MacDonald published In utero but there needs to be more data supporting this.
In utero transmission in dogs.
1995 Fetal outcome in murine Lyme Disease.
1991 Relative infective of Borrelia Burgdorferi in Lewis rats.
Some co infections
Bartonella - Fleas, Mosquitoes, sand flies
Babesia - blood transfusions
Rickettsia - very dangerous for heart
Coxiella Burnetii (Q fever) usually by inhalation also by tick bites.
Opportunistic infections:-
Cpn
Mycoplasma
Herpes groups 1-6
Yersinia
Coxsackie virus
E.B.V
Cytomegalovirus
HHV6
Are we too focused on Borrelia?
Are there other consequences of other infections within families to re infect?

Dr. Marjo Valonen Case Reports: Herbal and Nutritional Treatment Protocols in Lyme and Co­Infections
Treating herbals mainly in her clinic in Finland.
Used to use antibiotics and still does but more and more using herbals.
Describes it as a war fighting microbes.
Big part of our work is to rebuild
Discusses Horowitz MSIDS concept and likes to follow this.
Supplement plan includes
High quality nutrition
Vitamin C natural forms or liposomal
Fish oils
Magnesium
Discussed case studies. 
Uses Cowden plus other herbals repeating testing for Borrelia WB, Elispot, Cpn and other co infections.
Recommends TICKPLEX a new test http://www.tickplex.com/
link to the clinic Dr Valonen runs  http://www.astris.fi/laakarit/ 

Professor Malcolm Hooper 3 T(ear)s for PACE: Travesty of Science, Tragedy for Patients, Tantamount to Fraud 
Travesty of science
Tragedy for patients
Tantamount to fraud
Starts with Prof Wessley with Functional Somatic Syndrome in 1999
Abhors - Non specific symptoms, as if you look you can find symptoms.
Response is CBT and GET!
People are so fixated they have stopped thinking.
Discusses his involvement with GWvets, ME CFS Fibromyalgia, and Multiple Chemical Sensitivity which are all syndromes of uncertain origin, another word Neurasthenic or M.U.S multiple unexplained symptoms. These are words of ignorance!
Organic phosphate poisoning - farmers
Aerotoxic syndrome - TCPs jet engine oils - pilots and cabin staff worst affected ( described by doctors as hyperventilation!)
Gulf War vets 25-30% are sick - used pesticides malathion etc, nerve gas sarin, given Pyridostigmine bromide - triple whammies.
Then given vaccines and even non deployed got vaccines and they were also affected.
Government lies.
Response is PACE designed to validate CBT and GET
There was no objective measurement,  no blinding a sine quo non for subject data. Original entry requirement was changed and manipulated. Moving goal posts.
D Tuller has done lots of papers regarding PACE Trial by Error was published in three parts in Virology blog -   http://www.virology.ws/2015/10/21/trial-by-error-i/
NICE guidelines on ME are unfit for purpose

Dr. Joseph Jemsek Applying Common Sense and Lessons Learned in Lyme Borreliosis Complex
'Everything I have learned I have learned from patients'
Chronic relapsing or otherwise 'unexplained' encephalopathy ---arthritic and list of symptoms 
Complex
Jill Livengood 10 years ago found in all neuronal cells tested observed Borrelia Burgdorferi in all cells. - http://www.ncbi.nlm.nih.gov/pubmed/17045505

Invasion of human neuronal and glial cells by an infectious strain of Borrelia burgdorferi.

70+ papers on persistence in human and animal models
Problem areas not enough treatment for Babesia and Biofilms.
Have to kill what comes out of bio films.
Chronic oxidative stress - chronic inflammation
Discussed limbic system with diagram
2003 Salazar et al found memory CD27 cells in Erythema migrans rashes indicating EM was not first exposure to the organism.
Listed various supportive treatments including Kefir, green tea, Yoghurt, coconut oil
Moles commonly found
Neurofibromas growth on nerves
Bone growth often associated with Bartonella

Dr. Alan MacDonald (via live video link from Florida) Chronic Borreliosis and Chronic Seronegative Lyme Disease ­ DNA Probes Solve a Diagnostic Conundrum
Dr Alan MacDonald's recent work finding Nematode worms in Multiple sclerosis MS patients spinal fluid and also finding Borrelia ( Lyme Disease) in the worms.

London Lecture May 15 2016 from Alan MacDonald on Vimeo.


A really excellent conference. Apologies for any mistakes I may have made in copying up my notes. 

I hope it encourages you to get the original presentations available shortly from AONM website 
http://www.aonm.org/


Presentations now available 
http://aonm.org.uk/ltv%20III

Lifting the Veil I
 http://lookingatlyme.blogspot.co.uk/2015/03/dr-judy-mikovits-infectious-pathogens.html

Lifting the Veil II
 http://lookingatlyme.blogspot.co.uk/2015/11/chronic-illness-testing-infections.html

Thursday, 12 May 2016

DRUG ACTIVITIES AGAINST BORRELIA PERSISTERS - LYME DISEASE PERSISTERS

A Drug Combination Screen Identifies Drugs Active against Amoxicillin-induced Round Bodies of Borrelia burgdorferi Persisters from an FDA Drug Library

Jie Feng1Wanliang Shi1Shuo Zhang1David Sullivan1Paul Auwaerter2 and Ying Zhang1*
  • 1Department of Molecular Microbiology and Immunology, Bloomberg School of Public Health, Johns Hopkins University, USA
  • 2Fisher Center for Environmental Infectious Diseases, School of Medicine, Johns Hopkins University, USA
Although currently recommended antibiotics for Lyme disease such as doxycycline or amoxicillin cure the majority of the patients, about 10-20% of patients treated for Lyme disease may experience lingering symptoms including fatigue, pain, or joint and muscle aches. Under stress conditions such as starvation or antibiotic exposure, Borrelia burgdorferi can develop round body forms, which are a type of persister bacteria that are not killed by current Lyme antibiotics. To identify more effective drugs that are active against the round bodies of B. burgdorferi, we established a round body persister model induced by amoxicillin and screened the Food and Drug Administration (FDA) drug library consisting of 1581 drug compounds and also 22 drug combinations using the SYBR Green I/propidium iodide (PI) viability assay. We identified 23 drug candidates that have higher activity against the round bodies of B. burgdorferi than either amoxicillin or doxycycline. Eleven of these scored better than metronidazole and tinidazole which have been previously described to be active against round bodies. While some drug candidates such as daptomycin and clofazimine overlapped with a previous screen against stationary phase B. burgdorferi persisters, additional drug candidates active against round bodies we identified include artemisinin, ciprofloxacin, nifuroxime, fosfomycin, chlortetracycline, sulfacetamide, sulfamethoxypyridazine and sulfathiozole. Two triple drug combinations had the highest activity against round bodies and stationary phase B. burgdorferi persisters: artemisinin/cefoperazone/doxycycline and sulfachlorpyridazine/daptomycin/doxycycline. These findings confirm and extend previous findings that certain drug combinations have superior activity against B. burgdorferi persisters in vitro, even if pre-treated with amoxicillin. These findings may have implications for improved treatment of Lyme disease.
Links into earlier posts on Prof Zhang research can be found:- 

Tuesday, 10 May 2016

MINISTERS ORDER MAJOR REVIEW OF LYME DISEASE - DIAGNOSIS, TREATMENT AND TRANSMISSION

Ministers have ordered a major review of the diagnosis, treatment and transmission of Lyme disease amid concern about a quadrupling in cases over the past decade. 


Public Health minister Jane Ellison made the announcement in the Commons following growing public debate about rising numbers of cases of the condition, which can cause neurological damage and crushing fatigue.

Ms Ellison said: "Lyme disease is a complex infection so we recognise that there are real challenges in diagnosis and treatment and in the light of this I'm pleased to say the Department plans to commission three reviews on the diagnosis, the treatment and the transmission of Lyme disease to inform future decision making."
She added: "In addition to the reviews that the Chief Scientific Adviser is overseeing we've actually also commissioned Nice to develop a new evidence-based guideline for care -

Go to The Daily Telegraph for the full report 
http://www.telegraph.co.uk/news/2016/05/10/minister-orders-lyme-disease-review/


Today's House of Commons debates - Tuesday 10 May 2016

Lyme Disease

4.
What progress has been made on improving diagnosis and treatment of Lyme disease.[904940]
The Parliamentary Under-Secretary of State for Health (Jane Ellison):
Lyme disease is a complex infection, so we recognise that there are real challenges in diagnosis and treatment. In the light of this, I am pleased to say that the Department plans to commission three reviews on the diagnosis, treatment and transmission of Lyme disease to inform future decision making.
Andrew Stephenson:
A constituent in Earby was struck down with a debilitating illness several years ago, which has totally destroyed her quality of life. Since then, I have been visiting her regularly at home every few months, as she has fought to get a diagnosis. Over recent months, all the evidence has started to point towards Lyme disease, but there seems to be precious little support out there for people with this condition. What more can my hon. Friend do to support constituents like mine?

Jane Ellison:
In addition to the reviews that the chief scientific adviser is overseeing, we have commissioned the National Institute for Health and Care Excellence to develop a new evidence-based guideline for care, specifically to respond to the sort of situation that my hon. Friend describes with his constituent. That is for publication in 2018 and it is being prioritised because of the interest in this area.
https://hansard.parliament.uk/Commons/2016-05-10/debates/16051027000003/OralAnswersToQuestions

Here is the link to the actual announcement in parliament this morning. You need to select 09.47.07 on the RH side.

http://www.parliamentlive.tv/Event/Index/fbd45ac2-43c6-41c0-b2d0-48a9f49b3b0b


Thursday, 28 April 2016

TOP SCIENTISTS' COLLABORATION ON LYME DISEASE - DIAGNOSTIC TOOLS AND EFFECTIVE CURE




Published on Apr 20, 2016 

Ten of the world's top scientists from leading institutions discuss their scientific insights on the problems and potential solutions for Lyme disease.

Senator Richard Blumenthall US Senate Speech

'The cases of Lyme are exploding in number and their severity impacts our economy as well as quality of life for Americans'

Introduced by David Rothman- Lyme Advocate

CDC reported 10 fold increase in the number of cases in 2013.

Dr Neil Spector Cancer researcher talks about implications in organ donation. He had a heart transplant due to undiagnosed Lyme Disease.


'In the era of genomics are we using archaic unreliable methods to test for Lyme?'

Dr William H Robinson Stanford University talks about the need to develop next generation tests that are much more accurate and sensitive to identify people with Borrelia Burgdorferi as well as other tick borne infections.

Dr Safwan Jaradeh Stanford University Neuromuscular and Neurological faculty. 'Nobody seems to think well could it be something like Lyme.'

Dr Brian Fallon Columbia University 
Director of the Lyme and Tick-borne diseases research center at Columbia.
 says - Lyme can cause many symptoms he talks about a child who manifested with compulsive cycling behaviour and anorexia which was caused by Lyme Disease and with treatment symptoms went away.

Dr Neil Spector goes on to say- 'Over 300000 cases a year I think demands more attention than Zika virus which overnight becomes a W.H.O. global health crisis. So it's not to minimize the problems of Zika but it is saying there are children who are equally suffering with Lyme disease and children who may be through the consequences of Lyme Disease dying and adults dying through consequences of Lyme Disease.

Stand 4 Lyme founder Sherry Cagan and her husband, Laird have joined forces with with Stanford Scientists to pave a medical path to wellness for patients at all stages of Lyme Disease. Stanford collaborative research with Harvard, Johns Hopkins and Columbia Universities. 

Dr Philip A Pizzo Stanford University Professor of Microbiology and Immunology
Dr Pizzo appointed the Stanford Lyme Working group a collaborative effort between Stanford researchers and other major universities.

Dr Laura Roberts Stanford University says 'Lyme Disease has been neglected scientifically with the Lyme disease working group at Stanford and other universities we are hoping to change that.'

Dr William Robinson - 'Lyme disease shares molecular mechanisms with many different diseases both microbial infections as well as certain inflammatory diseases and the work of the Stanford Lyme working group can help uncover these mechanisms.

Irv Weissman MD Stanford University is working on macrophage problems and persistently infected cells.

Dr Nevena Zubcevk Harvard University is working on - ' Testing blood banks for Lyme and co infections' and also clearing up difficulty we are currently having  with 'In utero transmission of Lyme'

John Nathanial Aucott Johns Hopkins University says this has been an ideal collaboration it has really advanced our ability to do research in Lyme Disease, we collaborate with Dr Bill Robinson at Stanford to develop bio markers or tools to better measure Lyme Disease.

Ying Zhang M.D. PhD Johns Hopkins Medicine
 says' Stand 4 Lyme unique strategy in partnership with top notch scientists from Stanford will ensure that best minds and cutting edge research and diagnostic tools are applied to building a more effective cure  for this complex and illusive disease.